special edition PULMONARY HYPERTENSION Spring 2011 • MariposaNews 4 n. SPRING ISSUE OF THE NEWSLETTER OF PHA EUROPE, EUROPEAN PULMONARY HYPERTENSION ASSOCIATION Austria Belgium Bulgaria Czech Republic France Germany Greece Hungary Israel Italy Netherlands Norway Poland Portugal Slovakia SloveniaTu r key TuSpain r key SwedenTu r key Switzerland Tu r key MAJOR AWARENESS INITIATIVE PUTS PH ON THE MAP ON RARE DISEASE DAY Report and photos of PHA Europe’s Breathtaking awareness campaign launched on international Rare Disease Day, 28 February 2011 PHA EUR PE Wilhelmstraße 19 • 1120 Vienna • AUSTRIA • +43 1 4023725 • +43 1 4093528 • [email protected] • www.phaeurope.org Breathtaking campaign 2011, an overview Editors Memo PHA Europe launched its Breathtaking awareness cam- press conferences, sports events etc. Many also took part paign on February 2011, International Rare Disease Day, in the national celebrations for Rare Disease Day. under the patronage of the European Organization for Dear friends, Finally, patient associations can greatly benefit from working Rare Diseases (EURORDIS). Each country brought its own personal touch thus making together at European level, sharing achievements, and learning the campaign truly unique. Some of the highlights include I am delighted to introduce Mariposa’s Spring 2011 special from each other. Different cultural backgrounds provide a wide Designed to demonstrate the impact of Pulmonary Hyper- Nils Paul Skara’s basketball team playing with blue lipstick edition reporting on PHA Europe’s Breathtaking awareness and enriching range of views and ideas. You will see that even tension on persons affected by the disease, the campaign for PH in Norway, mimes dressed in black with hands and campaign. This campaign, led by PHA Europe and supported within the context of a common awareness campaign each focused on the more rare type of PH, Pulmonary Arterial lips painted in blue in Hungary, singers in national tradi- by Bayer HealthCare, was successfully launched on 28 February country has provided its unique and personal contribution. Hypertension (PAH) using very powerful imagery to com- tional dress in Bulgaria, PHers running for PH in Spain, and 2011, International Rare Disease Day (RDD). RDD is an municate its severity. Images of a woman, a young boy Rosie’s touching “patient diary” video in Belgium. annual event coordinated by the European Organization for We are proud of the results obtained with our first campaign and an elderly man, each with blue lips and a blue hand Rare Diseases (EURORDIS) and the National Organization and hope to involve more countries for an even more successful around their necks, were featured. Blue lips are one of the Member associations managed to raise considerable interest for Rare Disorders (NORD). 2012 program. signs of PH and the hand around the neck symbolizes the from the media. Many of PHA Europe’s patient leaders breathlessness and sense of suffocation that goes with the were interviewed on TV, radio and press: 95 media outlets Organizing the campaign is a landmark event for PHA Europe. Thank you to all for your invaluable support! disease. These attention grabbing images created more across seven European countries - Belgium, Austria, It is the first time that Pulmonary Hypertension patient asso- awareness of the need for early, accurate diagnosis and France, Germany, Norway, Spain and Switzerland - covered ciations in Europe have united to raise awareness on this Gerald Fischer appropriate treatments to the launch. In addition, disease. Two main events were held in Brussels and Vienna, and President PHA Europe improve the lives of people coverage appeared on national activities took place in seven other countries across living with all types of PH. websites with global reach, Europe including Bulgaria, Germany, Hungary, Norway, Poland, PS. We have just been informed by EURORDIS that “our” including CNBC and Portugal and Spain. Campaign materials were also distributed video, “My Breathtaking story”, won third prize in the annual Train stations and other Yahoo Finance. Coverage in the Czech Republic (medical press) and Italy and some EURORDIS video contest for Rare Disease Day! This video crowded places were in top newspapers was also awareness raising was organized in Slovakia. This edition of was filmed as part of our Breathtaking campaign and features PH chosen to hold awareness secured in Austria and Mariposa News contains detailed reports on all the activities patient Rosie and her family, from Belgium. events. One of the two Belgium. A multimedia and on media coverage achieved. international launch news release featuring events took place in one photos and video footage More awareness about PAH is important not only for the Contents of the businest metro sta- were distributed to almost patients themselves (“finding” the patients, earlier diagnosis • Editor’s memo p. 02 tions in Vienna, head- 1000 journalists, with over and treatment) but also for medical professionals, national quarters of PHA Europe 100 using this material governments and EU institutions. • Breathtaking campaign 2011, and the Austrian PH which was also placed on an overview and map of events p. 03 patient association. The video sharing websites. As we all know, despite considerable progress in diagnosis and other launch event was Sites were specifically treatment over the last 15-20 years, PH patients still have many • Austria p. 06 held in Brussels, seat of the chosen to provide the problems and unmet needs. First and above all, the level of • Belgium p. 08 EU institutions, in Brussels from left: Campaign coordinators Gerald Fischer and Pisana Ferrari largest possible potential awareness and knowledge of the disease among the general pop- (PHA Europe), Jutta Ulbrich and Thomas Bertschik (Bayer, Berlin) Central Station, one of the and Maria Patey (Ketchum Pleon, UK) audience. ulation and the medical profession is still very low. Even now, • Bulgaria p. 10 largest train and metro sta- PH is often not diagnosed; when it is, it is diagnosed late. As • Germany p. 12 tions. Leading cardiologists All of this would not have a result, patients very often start treatment late, when the and several PH patients, as well as representatives from PHA been possible without the support of Ketchum Pleon, UK disease is in an advanced stage, worsening their prognosis and • Hungary p. 14 Europe, were interviewed by media to provide their perspec- and in particular Maria Patey, and Jutta Ulbrich and quality of life. Additionally, not all patients in Europe have • Norway p. 16 tives on this life threatening condition. Thomas Bertschik from Bayer Healthcare. THANK YOU! access to all approved drugs and the availibility of surgery also differs from country to country. • Poland p. 18 From the beginning the campaign was open to other We are very proud to say the follow up on the campaign • Portugal p. 20 PHA Europe member associations to ensure that the seems to be equally promising. At national level, there are PHA Europe believes that all patients should be able to messages reached as many people as possible. When the many more initiatives being organized and the associa- benefit from the invaluable support provided by patient asso- • Spain p. 22 campaign was first presented to PHA Europe members at tions themselves are getting more members, more phone ciations. That’s the reason for our “White Spots” program (no • Czech Republic, Italy, Slovakia the end of 2010, it was great to see how many of them vol- calls etc. At European level, EURORDIS has just invited countries without associations!). Patient associations can and Switzerland p. 24 unteered to take part and organize acitivities in their PHA Europe to present the campaign in Paris at the end provide patients and their families with practical advice for own country. of June at an international workshop of the Council of day-to-day living; the means to exchange experiences with • Conclusions p. 26 European Federations. They wish to use it a case study on other patients; information in plain language about PH and • Next edition of Mariposa News p. 26 All the campaign materials were translated into eleven lan- how to organize a successful common campaign around treatment options; guidance on access to drugs, pensions, or guages and printed and distributed by member groups. In Rare Disease Day! insurance, and economic support. Patient associations can • Members of PHA Europe and relatively short time they organized different types of benefit patients through advocacy, lobbying and awareness contact details p. 27 awareness raising events from placard posting and distri- Pisana Ferrari campaigns. As PH is a rare disease, joining forces across bution of flyers at train stations to concerts, seminars, Vice President PHA Europe borders is vital in order to have influence here in Europe and • What is Pulmonary Hypertension? p. 28 through-out the world. 2 PHA EUR PE 3 MAJOR AWARENESS INITIATIVE PUTS PH ON THE MAP ON RARE DISEASE DAY Climbing the stairs to increased awareness in On track for PH awareness Brussels Central Station in six major city train stations across Germany Blue lips team gets the ball rolling for PH awareness in Norway Pop stars and patients delivered the ‘Breathtaking’ message in Vienna RDD wishes reach the sky, and awareness of PH soars across Poland Spain’s race for hope produces a winning result for PH awareneness The magic of pantomime spells out the PH message in Hungary Portugal’s media attention is Bulgaria rocks, thanks a PHantastic success! to PHA Bulgaria and the National Alliance of People with Rare Diseases 4 PHA EUR PE 5 Pop stars and patients delivered the Breathtaking message in Vienna n. 4 - Spring 2011 Prof. Walter Klepetko, AKH Vienna One of the two international campaign launch events took place Walter Klepetko, world renowned lung transplant surgeon from the in Vienna, headquarters of PHA Europe and PHA Austria. The Vienna General Hospital, AKH; Prof.